'An enormous disabling event': Long COVID could have inequitable impact on Californians

It's been two years since Angela Meriquez Vazquez was infected with COVID-19, but some of her most debilitating symptoms remain. Migraines, fatigue, brain fog, heart palpitations, insomnia and sometimes even a fever are among the symptoms that disrupt her day-to-day life.

Lisette Duarte still needs an inhaler eight months after her COVID-19 infection, and damage to her voice box occasionally leaves her struggling to speak. She can't return to work, so she relies on Medi-Cal for her health coverage.

Long COVID is a mysterious, debilitating and difficult-to-diagnose compilation of post-infection problems that have affected perhaps millions of Californians. And health experts fear that the toll will be especially harsh for Latinos, African Americans and low-income residents, who already face a disproportionate impact from COVID-19 as well as less access to quality health care.

At least 20 specialized, post-COVID programs have been set up at medical centers in California to help treat these long-haul patients. But they already are overburdened, and experts fear that long COVID could go largely unaddressed or misdiagnosed in people who have few resources.

"What we know is that because the greatest amount of exposure happens in low-income communities, they will have the highest burden of long COVID," said Dr. Neeta Thakur, a pulmonary and critical care doctor at UC San Francisco.

Long COVID patients often need a team of specialists because cardiac, respiratory and neurological problems have been documented. As a result, people with Medi-Cal or no health insurance may struggle to find proper care and pay for expensive tests.

Some vast regions of California have few doctors experienced in diagnosing and treating long COVID conditions. Of the 20 post-COVID clinics and programs in California, according to a crowdsourced list collected by a patient advocacy group, nearly all are in the Bay Area, Los Angeles, Orange County and San Diego. Of those listed, only one is in the Central Valley. None are in the San Joaquin Valley, an eight-county region where hospitals were inundated during previous COVID-19 infection waves.

The general experience (of patients) is that they've been seen by numerous providers in the community.

They feel frustrated," said Dr. Jeffrey Hsu, a cardiologist who is on a team of physicians treating patients at UCLA Health's long COVID program. "They're told it's anxiety or to be patient, that symptoms will get better on their own."

Studies have estimated that more than one in four COVID-19 patients experience symptoms that last for months, known as "long haulers." In California, that could mean as many as 2 million people among the 8.5 million COVID-19 cases may have long COVID, including more than 100,000 African Americans and one million Latinos.

But it's hard to know how many people actually suffer from long COVID, largely because it is still being defined: The U.S. Centers for Disease Control and Prevention says symptoms are considered long-term if they last more than four weeks after an infection; the World Health Organization says it's 12 weeks.

The California Department of Public Health is collaborating with UCSF and UCLA on a national study tracking the aftermath of COVID infections through patient surveys. Without providing details, the department also said it is working on partnerships with the University of California system to expand access to post-COVID information and care.

Demand for long COVID care exceeds capacity

At UCLA, the long COVID team includes four primary care doctors who evaluate patients and then connect them to the appropriate specialist -- cardiologists, neurologists, pulmonologists, psychiatrists and others.

Hsu said demand for the program is high. UCLA's program has received more than 300 referrals, but only has capacity to see 200 patients.

About half of the patients in UCLA's program are already UCLA Health members, while the other half are referred from other providers around Los Angeles, he said. He worries about patients who don't have insurance since a lot of expensive tests are involved, and those battling symptoms who live in areas without access to providers who have been trained to identify long COVID.

"We just have to imagine that the patients we see are the ones who have the resources to get to us," Hsu said.

Patients with long COVID could go to their primary care doctors, who can then consult with experts. But another challenge is the long-standing uneven distribution of primary and specialty care physicians across the state. For instance, the ratio of active physicians per 100,000 people in the Inland Empire and San Joaquin Valley is about half of the ratio in the Bay Area, according to a 2018 report from the California Health Care Foundation.

Duarte, who lives in East Los Angeles, had to push hard for months to get the right help for her ongoing conditions.

"Nobody was listening to me," she said. It took her switching doctors and filing complaints, but last month she got a referral to a long COVID program.

"I definitely feel like I've received substandard care," Duarte said. She wonders if it's because she's covered by Medi-Cal, California's insurance for low-income residents.

Research has shown that in many cases, the health symptoms of people of color and low-income people are not taken seriously, leading to misdiagnosis and prolonged poor health.

For example, African Americans receive worse care than whites in 43% of the quality-of-care measures, such as effective treatment, set by the federal government. Latinos receive worse care in 36% of the measures compared to whites.

That inequity could be particularly problematic for patients with long COVID, since it's difficult to diagnose and treat properly. Similar to the disparities seen in other chronic conditions like diabetes and hypertension, providers say they anticipate unequal treatment of the conditions that spring from long COVID.

"Just as the state tries to put an equity framework around vaccine distribution, having some kind of equity framework around limited resources when it comes to treatment may be helpful," said Kristen Azar, a registered nurse and scientific medical director for the Sutter Health Institute for Advancing Health Equity.

Vazquez works for the Children's Partnership, an advocacy organization for child health, so she understands how to navigate health systems and advocate for herself. But she still found it difficult to score the right team of providers familiar with post-COVID disorders, even where she lives, in Los Angeles, and even with good health insurance.

"I've changed providers several times," said Vazquez, 34, who was a runner before she was infected with COVID. "I am being treated for several conditions that are likely going to be with me long-term, if not forever."

Among the conditions she is being treated for: postural orthostatic tachycardia syndrome, a circulatory disorder that leaves her lightheaded. She doesn't leave her house much because even the slightest social activity leaves her exhausted.

"What would have been a normal day, let's say working and then going to a brewery for happy hour -- if I did that today, I would absolutely go to bed with a huge fever and the shakes," she said.

Last year, Vazquez became president of Body Politic, an advocacy group that serves as a resource and support group for long COVID patients. She advocates for training and education about long COVID among Medi-Cal providers, so that low-income patients can receive proper care.

"The state needs to make sure that all Medi-Cal providers and beneficiaries have information about long COVID, " Vazquez said. "When someone tests positive, at the next follow up appointment, doctors should be asking about long-term symptoms."

Medi-Cal patients have a lower vaccination rate than California's general population, leaving them more vulnerable to severe disease and long-term symptoms. About 56% of Medi-Cal enrollees had received at least one dose of the vaccine, compared to 83% of the general population, according to the state's February vaccine update.

Blacks and Latinos in California also have a lower vaccination rate than whites.

People who are vaccinated are less likely to report some symptoms of long COVID, such as muscle pain and fatigue, according to a small study in Israel. But vaccinated people and those with mild infections can still wind up being COVID long haulers.

With debilitating symptoms, many can't return to work

Vazquez gets to work from home, a privilege not everyone with long COVID has.

"That reduces my exposure," Vazquez said. "But essential workers, there's no way that in my current health I could be on my feet and check groceries everyday."

About 2.37 million people may be out of work at some point due to long COVID, according to Dr. Gregg Vanichkachorn, medical director of the Mayo Clinic COVID Activity Rehabilitation Program, who spoke at a state legislative hearing earlier this month.

While the state doesn't have its own estimate, "it's likely that a large number of Californians will be affected," Dr. Erica Pan, the state's epidemiologist, said at the hearing.

"The COVID-19 pandemic has the potential to be an enormous disabling event, in addition to being a cause of acute illness and death," she said.

Duarte is one of the patients who said she can't return to work. She is a consultant who helps education and autism nonprofits develop programming. She said her voice box issues, which she thinks could be from excessive coughing, her brain fog and occasional reliance on oxygen tanks make it impossible for her to work.

"I wish we had access to case managers who attend appointments with you and help you navigate this," she said. Before her infection, she had what she calls an impeccable memory, but now she has to create lists for just about everything.

As researchers seek to learn more about the disease, many patients grow desperate to find relief.

Duarte said she hears from friends and family members who also deal with symptoms like shortness of breath and cough months after a COVID-19 infection.

"There are many of us, and I think for the most part, people are just dealing with it on their own," she said.